just thought you might be interested in my blog over the past year dealing with Dr. Clune and also my latest posting on the colon cancer forum I belong to.
Tom (My boyfriend) will be calling you tomorrow as from now on I don't have anything to say to anyone at the cancer treatment center and Tom is my patient advocate and will speak to you, Dr, Clune, Amy, etc for me and I will go along with any decisions Tom thinks is best for me.
I am also calling the American Cancer Society and the American Medical Association regarding Dr. Clune. Simply to ask a few questions.
Here is my blog:
http://coloncancerstageiv.blogspot.com/
Here is the latest posting on the colon cancer forum:
I called my Oncologist's office today and spoke to both the other Oncologists Assistants, they said they would speak to the Oncologist's and get back to me, not three minutes after I hung up with the second one, Amy, my Oncologist's Assistant called me and said that in that office they did not allow switching of Dr's inside the same office and no Oncologist would be able to tell me what I wanted to hear.
Tom and I were out and I broke down. It seems Tuesday I will go to get my PET scan then Wednesday I am to CALL my Oncologist and get the results over the phone (Now I have not had chemotherapy or any treatment since July 19th so I cannot see how the results of the PET scan will be anything but worse than they were and yet he will only do a PHONE consultation to tell me the news? He won't have me come into his office to explain it to me?????? How can that be?) then he won't see me for I guess another six weeks unless I do chemotherapy. I don't know how to make a decision to do chemotherapy without some help from my Oncologist but I won't get any so I guess I just will not do chemotherapy as I originally planned no matter if the cancer is standing still or has gotten worse as I just cannot take those side effects anymore, at least not without some input from my Oncologist on if say I might have a year left and the chemotherapy might give me three more months, well then I would not do it as I could not bear the quality of life with the chemotherapy but if I had a year left and the chemotherapy might give me six months or a year more than I would talk to Tom about it and decide. But how can I decide when I don't have any facts or statistics or help to decide?
So as of right now "IF" we go back in to see the Oncologist I see right now at any time Tom will have to talk to him as I will not say word one to Him and if my Oncologist will not help me in giving me the facts on both the benefits or disadvantages of doing chemotherapy right now then I will simply not do treatment. As my Oncologist said to me Monday, "You still look healthy" so I am not going to die right away and I don't know what else to do but heal from the hernia treatment then live life to the fullest and enjoy life as I did before I started going to this Oncologist and started chemotherapy.
To tell you the truth my Oncologist has me so scared that no other Oncologist will help me in the way I am asking for help, (He and His assistant both keep saying over and over again no Oncolgist will tell me how long I have or what the chances of survival are or anything close to my question) that when I even think about calling to make an appointment for another Oncologist or having to go see one and go through this whole thing again I break down and cry for about an hour before I can get myself under control. I guess I will just wait and see what my results of my Pet Scan are, figure out for myself how much longer I have then never see another Dr. again until I get to the end of my life when I have to be put on hospice.
It's my fault for not listening to my instincts when I first walked into this Oncologist's office and for being wishy washy about seeing another one during this time and now I am paying the price.
Total hysterectomy July 23 2008, mass in colon.
Colonoscopy Aug 2008
Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin
July 24, 2010: Decided to stop chemotherapy
Next PET scan: Sep/Oct
Most recent CEA Level: 08/16/10: 284.8 up from 08/02/10: 163.7
Wednesday, October 6, 2010
Update on hernia repair healing and Oncologist visit
My surgeon is very very pleased with the way everything is healing and says within two weeks I should be past any of the danger points and hopefully past the few pain points I have now. I have a wonderful circular pattern of now closed holes on my stomach where she laparoscopically closed the hernia after pushing everything back where it needed to be then sutured the mesh to the flesh to close the hole (The hernia was pretty damn big!) and I once more have a flat stomach (grins). I don't have to go back to see her for any more checkups or anything unless I get worried about something, feel changes in the area or have pain past the next two weeks. I love my Surgeon.
On the other hand I hate my Oncologist, I hate my Oncologist, I hate my Oncologist.
Why you ask? Short and to the point, because he has no human compassion and refuses to listen to a word I say or take under consideration my requests of him.
He has ordered a PET scan to see how much more damage has been done by the cancer since I have not had chemotherapy since July 19th and I asked him if the damage is not too severe that I will still be able to do chemotherapy could he at the time of the PET scan (Oh he had my chest X-ray done from before my hernia surgery but refused to tell me anything about it) if he could give me a time line if I did not do chemotherapy versus if I did do chemotherapy on life expectancy so "I" can make an informed choice if "I" feel the time gained by more chemotherapy would outweigh the likely hood of highly increased side effects judging from July 19th's chemotherapy versus quality of life if I don't do chemotherapy.
He flat out told me no, then proceeded to give me a lecture about I should be happy each and every day and smile and not think about when I start going downhill as "HE" will tell me about 3-4 months before I die. He said "You look fine now and the clincal trial (the same one he has been dangling in front of me like a carrot for a year now and is STILL on FDA clinical lockdown) will be open in January (There is no way he can know this so he's a liar) and we will get you started on it then.
There are so many things this many lies about or won't help ease my mind about or just give me the damn truth about it makes me go into panic attacks. I told Tom from now on HE can talk to the Oncologist as I have nothing more to say to the man.
Anyways we went back and forth in a hollering match until I was again in tears and total panic attack and am basically living off valium to keep from losing my mind at this point as I don't know what to do now. Oh and he told me I was not his only patient and so he could not spend all the time talking with me that I demand when I see him? My fricking insurance companies pay him $200 for each office visit and he wants to brush me off with five minutes and a "do as I tell you with no questions attitude".
Tom totally does not understand my feelings about all this and I told him like I said before, "From now on when we go to see the Oncologist you talk to him and you make the decisions and when he screws up like he did when he forgot I had the KRAS mutation and wanted to put me on Vecibix, it's on your head when you decide we go ahead and do it and I suffer the side effects for nothing."
Anyways I hope ya'll are having a better time of it. You are all in my thoughts and prayers and I will come into the forum sometime this week to try and help others and take my mind off my own thoughts. Oh and I see a MSW every friday for therapy, she comes to my house so hopefully this will help with my panic and anxiety attacks.
On the other hand I hate my Oncologist, I hate my Oncologist, I hate my Oncologist.
Why you ask? Short and to the point, because he has no human compassion and refuses to listen to a word I say or take under consideration my requests of him.
He has ordered a PET scan to see how much more damage has been done by the cancer since I have not had chemotherapy since July 19th and I asked him if the damage is not too severe that I will still be able to do chemotherapy could he at the time of the PET scan (Oh he had my chest X-ray done from before my hernia surgery but refused to tell me anything about it) if he could give me a time line if I did not do chemotherapy versus if I did do chemotherapy on life expectancy so "I" can make an informed choice if "I" feel the time gained by more chemotherapy would outweigh the likely hood of highly increased side effects judging from July 19th's chemotherapy versus quality of life if I don't do chemotherapy.
He flat out told me no, then proceeded to give me a lecture about I should be happy each and every day and smile and not think about when I start going downhill as "HE" will tell me about 3-4 months before I die. He said "You look fine now and the clincal trial (the same one he has been dangling in front of me like a carrot for a year now and is STILL on FDA clinical lockdown) will be open in January (There is no way he can know this so he's a liar) and we will get you started on it then.
There are so many things this many lies about or won't help ease my mind about or just give me the damn truth about it makes me go into panic attacks. I told Tom from now on HE can talk to the Oncologist as I have nothing more to say to the man.
Anyways we went back and forth in a hollering match until I was again in tears and total panic attack and am basically living off valium to keep from losing my mind at this point as I don't know what to do now. Oh and he told me I was not his only patient and so he could not spend all the time talking with me that I demand when I see him? My fricking insurance companies pay him $200 for each office visit and he wants to brush me off with five minutes and a "do as I tell you with no questions attitude".
Tom totally does not understand my feelings about all this and I told him like I said before, "From now on when we go to see the Oncologist you talk to him and you make the decisions and when he screws up like he did when he forgot I had the KRAS mutation and wanted to put me on Vecibix, it's on your head when you decide we go ahead and do it and I suffer the side effects for nothing."
Anyways I hope ya'll are having a better time of it. You are all in my thoughts and prayers and I will come into the forum sometime this week to try and help others and take my mind off my own thoughts. Oh and I see a MSW every friday for therapy, she comes to my house so hopefully this will help with my panic and anxiety attacks.
Sunday, October 3, 2010
Starting to feel better
Am starting to feel better but today and tomorrow are Tom's days off so will post Tuesday after he goes back to work and with what happens Monday at the Surgeons for my check up and at my Oncologist to see where we go from here.
Love,
Marsha
Love,
Marsha
Tuesday, September 21, 2010
Colon Cancer and recovery
I had my hernia surgery on the 10th and today is the first time I have felt like getting on the computer. The hernia surgery went well but my Surgeon came to me right before starting surgery (Before the wonderful drugs were adminstered) and asked me, "Marsha, do you really want to go through this?" I asked why and she said "There is a lot of cancer in your lungs, this can be a tough surgery to recover from and I wanted you to understand that" I asked her, her professional thoughts and she said "Let's do the surgery" I was in the hospital over night. very nice nurses. Only had pain when I had to get up or down to go to the bathroom and they helped me with the moving then a wonderful shot of demorol would come. Tom and I did not prepare well for the hurdles at home of getting up from the bed or down onto the bed or lying comfortably in bed so finally yestereday we went and bought a walker, not to help me walk as I can do that pretty good of slowly, put as support to get into or out of bed and a wedge for me to lay on instead of rolled blankets and pillows and it seems to work great.
I have started to see a Therapist/Social Worker, for now once a week to talk over issues and to help me learn where these panic attacks and some of my emotional problems are coming from. Still having pain and taking percocet but doing well, losing weight as I really have no appetite. I saw my Surgeon for a check up yesterday and all is healing well, I asked her about her question to me before surgery and she said she just wanted me to be aware of the recovery time and balance that against my cancer. I see her again on the 3rd of October and am going to try to call today to see if I can get in to see my Oncologist the same day.
This is the short version and will add to it later as I feel up to it, thank you all for your prayers and thoughts.
I have started to see a Therapist/Social Worker, for now once a week to talk over issues and to help me learn where these panic attacks and some of my emotional problems are coming from. Still having pain and taking percocet but doing well, losing weight as I really have no appetite. I saw my Surgeon for a check up yesterday and all is healing well, I asked her about her question to me before surgery and she said she just wanted me to be aware of the recovery time and balance that against my cancer. I see her again on the 3rd of October and am going to try to call today to see if I can get in to see my Oncologist the same day.
This is the short version and will add to it later as I feel up to it, thank you all for your prayers and thoughts.
Sunday, September 5, 2010
Does cancer or chemotherapy change you?
As a person who knows without a doubt I am going to die from this and have no idea when let me share some observations.
It is hard on both the person who has cancer and is going through treatments or even not going through treatments and it is hard on other people around that person whether caregiver, family member, husband/wife, girlfriend/boyfriend or friends.
I am changed, It changed me from the day they told me my surgeon told me he felt a mass in my colon while checking to make sure no surgical implements or towels or pads had been left behind from a total hysterectomy. (No "medical" need for the hysterectomy, I had simply had enough of the "monthly" thing, had, had my tubes tied since the birth of my second son in 1978 and was nearing menopause). It changed me again when I was told it was Stage IV metastasized to my lungs and liver. It changed me again when I started chemotherapy and found out I had the KRAS mutation which means my chemotherapy options were limited, it changed me when the chemotherapy had me so I could not think of a word I wanted to say or think how to spell T H E, it changed me in July after I spent two weeks in hell dealing with side effects from chemotherapy and decided to stop chemotherapy. It changed me this week when I finally got my results of my last CEA level from 08/16/10 and it had jumped 120 points in two weeks, it changed me again when I did some calculations and figured out how much my CEA level might be now (I figure 400-500) I don't know for sure as even though I had decided to stop chemotherapy anyways, my oncologist really has had nothing to do with me as I go in for hernia surgery this friday and there's nothing for him to do until after the surgery and I recover. It changed the way I looked at the world; sometimes if I am on an upswing all is beautiful and bright and I can almost feel hope, sometimes when on a downswing as now it's a cold lonely world. It changed me this morning when my boyfriend was trying to figure out where to put the new television he bought and I was trying to explain to him I would trip over the cords if he put it on one side of the room and trailed the cords across the door front and got me frustrated to the point I said "I don't care, put it where you want to put it I won't be here that long anyway" and he absentmindly said "I know"
It changed me, both the chemotherapy and the cancer itself and I wish to God they had never told me I had cancer, just let me go until I didn't go anymore.
It is hard on both the person who has cancer and is going through treatments or even not going through treatments and it is hard on other people around that person whether caregiver, family member, husband/wife, girlfriend/boyfriend or friends.
I am changed, It changed me from the day they told me my surgeon told me he felt a mass in my colon while checking to make sure no surgical implements or towels or pads had been left behind from a total hysterectomy. (No "medical" need for the hysterectomy, I had simply had enough of the "monthly" thing, had, had my tubes tied since the birth of my second son in 1978 and was nearing menopause). It changed me again when I was told it was Stage IV metastasized to my lungs and liver. It changed me again when I started chemotherapy and found out I had the KRAS mutation which means my chemotherapy options were limited, it changed me when the chemotherapy had me so I could not think of a word I wanted to say or think how to spell T H E, it changed me in July after I spent two weeks in hell dealing with side effects from chemotherapy and decided to stop chemotherapy. It changed me this week when I finally got my results of my last CEA level from 08/16/10 and it had jumped 120 points in two weeks, it changed me again when I did some calculations and figured out how much my CEA level might be now (I figure 400-500) I don't know for sure as even though I had decided to stop chemotherapy anyways, my oncologist really has had nothing to do with me as I go in for hernia surgery this friday and there's nothing for him to do until after the surgery and I recover. It changed the way I looked at the world; sometimes if I am on an upswing all is beautiful and bright and I can almost feel hope, sometimes when on a downswing as now it's a cold lonely world. It changed me this morning when my boyfriend was trying to figure out where to put the new television he bought and I was trying to explain to him I would trip over the cords if he put it on one side of the room and trailed the cords across the door front and got me frustrated to the point I said "I don't care, put it where you want to put it I won't be here that long anyway" and he absentmindly said "I know"
It changed me, both the chemotherapy and the cancer itself and I wish to God they had never told me I had cancer, just let me go until I didn't go anymore.
Saturday, September 4, 2010
Just some thoughts about CEA level and upcoming surgery
Thank you for your responses and well you know me, the least bit of things happening and I go off half cocked and into panic attack land but I don't think I was too bad this time was I? (grins) So I figure by now if the CEA level is rising at the same rate I should be somewhere in the 400's but Tuesday I go in for my "pre-operation" tests, including a blood draw and think I will ask them if they will run a CEA level just to see as my Oncologist won't be in the picture until I heal enoough from the operation to start getting around and up and down the stairs and able to head to see him or his P.A. From what I have read on the internet, I am pretty much looking at the end of September beginning of October which will be when my Oncologist will also order a PET scan. So anyone want to bet on what my CEA level will be then? I am taking (doing calculations in my head) 800 as my number LOL.
I am getting a bit scared about surgery as now we are under the week mark. For someone who is not a surgery fan and would never do cosmetic surgery purely because of the throwing up after coming out of GA part and the pain part I seem to have had a lot of surgeries in my life.
1968 - Tonsils out
1978 - Tubal Ligation
1993 - Urethra Stretched (Don't know the technical term)
1996 - Gall bladder removal
2005 - Bladder Lift
2008 - Total Hysterectomy
2008 - Colectomy
2008 - Repair of shattered left ankle
2010 - (Upcoming) Hernia Repair
So anyways we went to the store yesterday, bought regular groceries as well as broth, soups, canned fruits, applesauce, oatmeal, Pre-made jello, and assorted juices and teas and such for me after the surgery. Today we go to buy Tom's present to himself, His 46" LCD? TV with blue ray player. He already bought the stand and got another HDVR from the cable company and all this is in the living room across from the daybed I bought (all beautiful cherrywood although different shades (I had no idea that cherry wood came in different shades?!?!!?) He's wanted this TV for a long time and more recently because he does work sometimes until 11pm then comes home and of course needs downtime to relax before he goes to sleep. I usually make it though watching Bill O'Reilly with him then am out cold until he has the TV on something (Like last night the football game he had recorded) and I get jolted out of sleep then am crabby and Pee'd off untl I can go back to sleep.
And I have several times when my hernia was hurting just grabbed a pillow and gone to sleep in the living room on the day bed as when I am hurting all I want is for the pain pill to work and knock me out so I don't feel the pain.
So this way, when I come home from the hospital if he wants to watch TV he can without waking me up (Bless his considerate heart that is a boy in a man's body excited about a new "toy" I am surprised he's not awake yet and saying "What time does the store open?" (It's 8:46am here)
Anyways I again thank you all for your words and will keep you updated or Tom will for a few days I guess after my surgery. I keep you all in my prayers and heart and (((((((((((((((((HUGS)))))))))))))) each of you.
I am getting a bit scared about surgery as now we are under the week mark. For someone who is not a surgery fan and would never do cosmetic surgery purely because of the throwing up after coming out of GA part and the pain part I seem to have had a lot of surgeries in my life.
1968 - Tonsils out
1978 - Tubal Ligation
1993 - Urethra Stretched (Don't know the technical term)
1996 - Gall bladder removal
2005 - Bladder Lift
2008 - Total Hysterectomy
2008 - Colectomy
2008 - Repair of shattered left ankle
2010 - (Upcoming) Hernia Repair
So anyways we went to the store yesterday, bought regular groceries as well as broth, soups, canned fruits, applesauce, oatmeal, Pre-made jello, and assorted juices and teas and such for me after the surgery. Today we go to buy Tom's present to himself, His 46" LCD? TV with blue ray player. He already bought the stand and got another HDVR from the cable company and all this is in the living room across from the daybed I bought (all beautiful cherrywood although different shades (I had no idea that cherry wood came in different shades?!?!!?) He's wanted this TV for a long time and more recently because he does work sometimes until 11pm then comes home and of course needs downtime to relax before he goes to sleep. I usually make it though watching Bill O'Reilly with him then am out cold until he has the TV on something (Like last night the football game he had recorded) and I get jolted out of sleep then am crabby and Pee'd off untl I can go back to sleep.
And I have several times when my hernia was hurting just grabbed a pillow and gone to sleep in the living room on the day bed as when I am hurting all I want is for the pain pill to work and knock me out so I don't feel the pain.
So this way, when I come home from the hospital if he wants to watch TV he can without waking me up (Bless his considerate heart that is a boy in a man's body excited about a new "toy" I am surprised he's not awake yet and saying "What time does the store open?" (It's 8:46am here)
Anyways I again thank you all for your words and will keep you updated or Tom will for a few days I guess after my surgery. I keep you all in my prayers and heart and (((((((((((((((((HUGS)))))))))))))) each of you.
Thursday, September 2, 2010
CEA level from 08/16/2010
Knew it was going to happen but finally got my CEA level from blood draw of 08/16/10, it is 284.8 so pretty much a 120 rise in two weeks from 163.7 on 08/02/10. Still not the highest it ever got which I think was like 494 or something after my very first chemotherapy treatment back in September of 2009. But it is going up and will only continue to as I have eight days still before my hernia surgery then a recovery period and then maybe the clinical trial but they are still on FDA clinical hold and might be still even after I recover. I think I will be getting a PET scan the last week of this month or the first part of October (whenever I can deal with getting up and out after surgery and recovery) so will know better then how much worse things are but I can tell from the rise in a short time, things are not going to progress as slowly as I thought it might. So we shall see after the PET scan, who knows maybe by that time it will have gotten high enough to scare me back into chemotherapy (wry grin). I think I can handle anything with God's help but am a bit upset over the jump in numbers in such a small amount of time.
Anyways please pray for me and I know, there are people who have CEA levels of 1500 or so who still are not close to the end so I will focus on the upcoming hernia surgery, surviving and recovering from that and then see what happens.
God bless and am thinking of and praying for you all.
Anyways please pray for me and I know, there are people who have CEA levels of 1500 or so who still are not close to the end so I will focus on the upcoming hernia surgery, surviving and recovering from that and then see what happens.
God bless and am thinking of and praying for you all.
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